My journey with multiple myeloma and a simple life.

Menu

So I talked with the bone marrow transplant coordinator for UHC this week to find out the actual numbers of our co-pay. She didn’t really know that but said that since Sutter was out of network, there could be unexpected bills that will show up. So I asked if we switch to in-network that won’t happen and she said yes. So I went hmmm….

So then I called UHC line and spoke to an agent and she was very helpful. As of right now till June 1st Barclay has met the $6,000 deductible so transplant is 100% covered. With that information, I came home and we discussed that it would be just easier and best for us to go in- network which will be UCD in Sacramento. Stanford or UcSF is just too far. Because we are less than 50 miles away( we are 40) no lodging or gas will be given. But that’s what we did the GoFundMe for.

So I called the nurse coordinator for Dr. Kiwan and told them we decided we needed to go with in-network. She spoke with Kiwan later and we canceled the appt for today. Then Barclay called his local oncologist and she is the one to send the referral to UCD. I think it’ll set us back a bit but the testing is done for his brother and he is a match. For some reason, they were going to mail us the results of the genetic breakdown to take to UCD. Not sure why they wouldn’t just send it with all his other test results. Anyway, we’ll need to meet with a transplant team all over but that’s ok.

I am 100% sure this is the right course of action. Even if we go past June 1st, we can make payments on the $6000. We will be sure they are aware of the deadline for this calendar year.

written by Sue from Wales. She is a wonderful writer and is truly living what she aspires to be.

I’ve always been an introvert but in my earlier years just ignored what I needed. I don’t do that anymore. I don’t like crowds, parties, concerts etc. It’s just not what I’m interested in.

I am truly in a place where I like being alone/or with B who’s generally outside doing something so I have time to do what I want. When he was traveling for work I had many days where I was alone all day till either my daughter or son came home later in the evening. I was perfectly happy doing my own thing whatever that may have been.

I am embracing this as I get older and don’t feel the need at all to ‘fit’ in.

Having embraced minimalism and loving the simplicity of things, I don’t need to overextend or keep busy. I do my daily routines and enjoy the day. I may work on a project or plan something that might need to be done.

Now that we’re in ‘treatment’ mode, there’s no traveling about and as a matter of fact, I just canceled our spring trip to New Brighton beach because another round of chemo will start. That’s okay because I believe you must live the season you’re in and not fight it. We’ll go traveling again when this is over and it will be delightful.

Just when I sent a priority letter to NYC Corrections the next day, my documents were in the priority envelope I had paid for from before. So I now have in hand my brand new birth certificate, my original marriage license and the court documents for my legal name change. What a miracle!!! All in all, it only took 8 months. Now I can get a passport and the new real ID from California.

Today B has a transfusion early. He needs both blood and platelets but it’s been 18 days for the blood so that is an improvement. Like I said we see the transplant doctor Thursday but we know he has tentatively scheduled him for another chemo in April. I also, did not quite register the co-pay issue or maybe I was in denial but 20% of 500,000 is $100,000. I just can’t get it in my head that we would be responsible for that. I mean we don’t even have any retirement money to speak of so WHAT ARE WE GOING TO DO??? I hope this is wrong and I’m going to have B call UHC and talk to the coordinator to find out. Somehow it just doesn’t seem right.

I’m heading to Costco this morning too. I need some greens, avocados, almond milk and a few other things which I’m sure will morph into a bigger shop. Oh, and I need to return 2 items. One is the Instant Pot Cookbook which is, in my opinion, a waste. I’ve never returned a book and feel kinda weird about it. Like what read the book and then give it back. Heck, I may not do it after all.

It’s going to be another nice spring day. We didn’t walk this morning but will tomorrow. Sunday is my favorite day for walking as usually, no one is there. But this Sunday, B has his transfusion scheduled for 8 am. He doesn’t get labs till tomorrow at 3pm so we won’t know what he needs till after that. So getting out the door will be too rushed if we try and walk at 7am.

Today is going to be a fun day as we are driving up to Tahoe, actually, Incline to go to the Marijuana store for B to get some edibles and may the oil. He can’t smoke anything as he signed an agreement not to while undergoing the transplant. So just the chocolates and something else.

Then we’ll go to Truckee for lunch.

The dogs will be home outside so we need to time it so they’re not out for too long. I think we’ll be gone for about 5 hours.

Here’s a couple of pictures of the Ikea cabinet we got for the bathroom. Funny, it’s really the only thing that would have fit there so I guess I was spot on.

I’m planning on painting the tub black and we’re hoping to replace the floor this summer or fall depending on if B will be well enough or we may hire someone to do it.

This is one of my most favorite prints. I found this at a garage sale many years ago.

It’s been another frustrating week with NYC corrections not answering my emails about our original marriage license and then LLS (leukemia lymphoma society) denied my insurance claim because the breakdown in the forms we have doesn’t have B as the Assoc. alone. It shows him plus one. So that was not good enough for them even though that’s how I’ve been doing it since last June. Go figure. I resubmitted everything again with an additional form we found that shows his health credits but it still only shows him plus one. So I’m not going to sweat it although I was pretty nasty on the phone saying that was all we had to show it.

Since I’ll be switching to Medicare by June 1st I can just wait till then as they do cover Medicare. I did speak to an insurance agent and actually got MORE info. Wow, It’s amazing anyone figures this stuff out. So I need to get a form from B’s HR stating I won’t be on his insurance and then go into SS office for them to process. Then I add the plan F and Part D. He was helpful in that he said to go with the less expensive drug coverage as right now I don’t need the chemo drugs. And actually, in the future, I would ask for only infusions so that would be covered by Part B. I can’t see me going back on Revlimid since I became refractory to it. But if that does happen I can change the plan in January ( I think that’s what he said).

So at least I know the next step.

Dinner is some kind of pizza. I’m not making one so it may be a frozen one.

After reading about ‘ The Laundress’ home cleaning products I decided to spring for the window cleaner and the all-purpose cleaner.

I love the simplicity of these products and especially like the white labels. Elegant but simple and minimalist looking.

What I didn’t expect is the window cleaner is ABSOLUTELY AMAZING. I have made my owner cleaner with vinegar and water. I’ve made it with the rubbing alcohol too. I’ve also been addicted to Windex. But they all after a few days still seem to leave a film or streaks.

The first time I used “The Laundress’ window cleaner I was completely blown away. It was crystal clear. It is non-toxic so I’m not sure how they formulate the ingredients but somehow. it must be their ratio that makes this so amazing.

I haven’t used the concentrated cleaner yet but will this weekend. I can only imagine it is as good.

If you’re looking for a wonderfully simple product give this a try. I’m looking to check out their laundry soap and a few other products of theirs so I’ll let you know.

Sunny again today and about 55 degrees. So not too warm but not too cold. I didn’t walk this morning so I may go out to walk @ 10.

Today, I’m concentrating on figuring out theMedicare part B. Mostly the drug coverage part. I’m planning on calling a few of the insurance companies to figure out the coverage better. Then I downloaded the form for part B and I guess that requires taking it into SS office.

Chores today include a quick swish and swipe of the bathroom, vacuuming, and just tidying up. I’ve been using my timer on my phone to see how long things take to do. It is a good technique if you’re starting out on your decluttering journey to set a time. I do 15-minute increments. Yesterday I ended up doing 2 sessions to get what I wanted to be done.

B has 2 injections at 3pm but he will drive himself as it is just a shot and no Benedryl is required otherwise I’d take him.

Last night I made a low carb chicken enchilada dinner it was pretty good even without the corn tortillas. Plus I made B a Mexican bean burger and it too was very yummy.

Finally, we are seeing the sunshine. It’s also supposed to be 60 today so hurray, spring is almost here. We walked early to try and figure out daylight savings. So it was still predawn and quite cold but it seemed to be a good time.

Today is B’s last chemo session in this round. Hopefully, it will kick in and his numbers improve. His WBC did go to 1.4 which is the best it has been so good news. We know his brother is a match BUT we don’t know how good a match which is called resolution. The higher that is the better the response. So we should know soon and also after we see Dr. Kiwan I’m sure he will let us know if we are moving forward or do another round of Dacogen. So still unknowns.

My daughter is going to go test drive a Honda Fit also and I will meet here there. The unfortunate news is she gave her notice at the library. She just didn’t want to deal with the negativity any longer. The library director wrote her up for not getting to work even though the freeway was closed. I told her to take it to the union, but she just had it. Thus she wants to get a better mileage car. So we’ll see.

I’m skipping the gym to go with her but I do need to stop at the store for milk and some veggies.

Hopefully, this is a quieter week with appts.

We had a lot of fun at IKEA yesterday and I got just about everything on my list. The best thing I found was this little plant stand for 4.99

I'm a wife and mom of three young kids - ages 11, 10 and 8 and I just happen to have cancer. Multiple Myeloma is a cancer of the blood that is currently incurable but IS considered highly treatable! My goal is to make people laugh, cry or feel a little less alone whether you are a mom, cancer patient or BOTH!